Certainly this is true for ME. The most severely ill patients - who are of course the ones most needing change - are the least able to protest! So what can be done?
ME Advocacy is a grass-roots organisation set up to try and give a voice to the most severely ill ME patients. Tomorrow, Tuesday, they will have student proxies marching in Washington DC appealing for more funding to address the issue of ME.
Indeed, one of those proxy individuals marching on the White House tomorrow will be doing so for me!
I sent the organisers of this event my photo and a short bio about my illness, which may seem an unusual move considering I live in N.Ireland! However this problem of ME neglect is not a local one, and in my view patients worldwide should enthusiastically support one another's efforts towards change.
It is my view that what happens in USA can have far reaching effects on the treatment of ME patients everywhere.
So this is just a brief blog post to wish the organisers of this event every success. I may not be with them physically but my heart is hoping for the same changes that they seek.
Colleen Steckel, Susan Kreutzer, Gabby Klein, Mary Ann Kindel, Tracey Tempel Smith, Polly Gilreath, Kathryn Stephens and Joni Comstock have all put a huge amount of effort into the organisation of this event.
Thank you all for this brave move.
The press release shown in the image above is also available here:
Act Up for M.E. - Boots On The Ground In DC
You can contribute to the cost of this event here:
Donation Page: "Act Up for ME Funding" Demonstration
10 Things ME Patients Need Now A post I wrote recently with N.Ireland in mind, but in truth I think these things are needed everywhere.